Factors linked with perceived stigma amid people with Epilepsy -across sectional study

People with epilepsy (PWE) continue to suffer from discrimination and often bear the negative attitudes surrounding this condition. The aim of the study was to assess the frequency of perceived stigma and factors associated with it among PWE in tertiary care centre.

A hospital-based, cross-sectional study was conducted using the Kilifi Stigma Scale of Epilepsy (KSSE) to assess the stigma associated with epilepsy and factors related to stigma.

A total of 260 consecutive PWE were recruited, with a mean age of 28.12±9.96 years. The majority of subjects had primarily or secondarily generalized seizures (85 %), and most of PWE don't know the cause of epilepsy (79.2 %) and feel that epilepsy is a contagious disease. Those with contagious beliefs felt more stigma (27.7 %). Stigma was perceived by 28.5 % of subjects using KSSE. Stigma was more perceived in those who had primarily or secondarily generalized seizures (23.9 %) and longer durations of anti-seizure medication (ASM) (24.4 %). Injury during a seizure was reported in 30 % of subjects and were more stigmatized (p<.01).

Perceived stigma in PWE was found to be correlated with contagious beliefs. There is a need for awareness and educational programs by healthcare professionals at different levels to support and encourage positive beliefs, dispel myths about epilepsy, and inform PWEs of the fact that it is not a contagious disease.